Privacy issues transformed in the genomic era

Researchers are attempting to develop new models to deal with patient privacy issues, including profound levels of patient participation in the dissemination of personal data, in the new era of genomic medicine, according to an article in the January issue of Science written by Jennifer Couzin-Frankel, based on interviews with participants and investigators in the RUDY trial and other projects.

The RUDY rheumatology registry in London is an example of such a new approach. RUDY, a registry used for research into rare bone diseases and vasculitis, has an emphasis on patients’ self-reported outcomes. In order to alleviate patients’ fears of loss of privacy because of data sharing, the study offers patients various controls over dissemination, according to one of the study’s principal investigators, Dr. Kassim Javaid, a University of Oxford (England) rheumatologist, wrote Ms. Couzin-Frankel (Science 2015;347:501-3).

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Patients in the study can determine whether their blood, scans, and medical histories can be shared with other researchers. In addition, they will have access to a clinical trial Web page where they can find out whether their tissues samples are being used by other research groups.

This model is thought to not only increase the sense of patient participation and authority in the study, but also to provide transparency and accountability as to how their information is being used. Dr. Javaid refers to this strategy as “dynamic consent,” because patients can choose which portions of the study to participate in and whether to restrict their data and samples to RUDY investigators or to allow others to study them.

The problem of maintaining privacy is profound, because DNA sequencing provides such a potent means of individual identification. Ms. Couzin-Frankel cites in particular a case published in Science (2013;339:321-4), in which a group working with Dr. Yaniv Erlich showed that a man could be uniquely identified based on a partial DNA sequence of his Y chromosome, age, and U.S. state of residence, which is the type of information commonly posted in DNA databases widely accessible to the research community. By combining this information with data he found for others in the same family on popular genealogy databases, where more than 100,000 people already have posted DNA markers, Dr. Erlich could not only identify the donors of the DNA but also could identify their family members as far as second cousins once removed.

Although such data can be encrypted, reported Ms. Couzin-Frankel, Dr. Erlich pointed out that this can render the information largely useless for research and doesn’t even always protect the donor.

In contrast, however, many participants in trials and databases, such as the database/Web group PatientsLikeMe, see patient altruism as key. PatientsLikeMe has recruited more 300,000 people with more than 2,300 different diseases, who are sharing their health data, how they’re faring in clinical trials, and acting as a support group to one another in order to help medical scientists and drug companies further research their conditions. Patients voluntarily agree to this free flow of information, even though it decreases their privacy.

In another example in which patients cite altruistic reasons for giving up their privacy, the Personal Genome Project at Harvard Medical School in Boston, founded by geneticist George M. Church, Ph.D., has nearly 4,000 participants sharing their DNA sequences and health histories online for anyone to view. The Personal Genome Project even has a “real name” option, which allows participants to post their identity, Ms. Couzin-Frankel reports.

The Science article author, Ms. Couzin-Frankel, is a science journalist with no relevant financial conflicts. The RUDY study is funded by the University of Oxford and the U.K. National Institute for Health Research.

[email protected]

Researchers are attempting to develop new models to deal with patient privacy issues, including profound levels of patient participation in the dissemination of personal data, in the new era of genomic medicine, according to an article in the January issue of Science written by Jennifer Couzin-Frankel, based on interviews with participants and investigators in the RUDY trial and other projects.

The RUDY rheumatology registry in London is an example of such a new approach. RUDY, a registry used for research into rare bone diseases and vasculitis, has an emphasis on patients’ self-reported outcomes. In order to alleviate patients’ fears of loss of privacy because of data sharing, the study offers patients various controls over dissemination, according to one of the study’s principal investigators, Dr. Kassim Javaid, a University of Oxford (England) rheumatologist, wrote Ms. Couzin-Frankel (Science 2015;347:501-3).

©Thinkstock.com

Patients in the study can determine whether their blood, scans, and medical histories can be shared with other researchers. In addition, they will have access to a clinical trial Web page where they can find out whether their tissues samples are being used by other research groups.

This model is thought to not only increase the sense of patient participation and authority in the study, but also to provide transparency and accountability as to how their information is being used. Dr. Javaid refers to this strategy as “dynamic consent,” because patients can choose which portions of the study to participate in and whether to restrict their data and samples to RUDY investigators or to allow others to study them.

The problem of maintaining privacy is profound, because DNA sequencing provides such a potent means of individual identification. Ms. Couzin-Frankel cites in particular a case published in Science (2013;339:321-4), in which a group working with Dr. Yaniv Erlich showed that a man could be uniquely identified based on a partial DNA sequence of his Y chromosome, age, and U.S. state of residence, which is the type of information commonly posted in DNA databases widely accessible to the research community. By combining this information with data he found for others in the same family on popular genealogy databases, where more than 100,000 people already have posted DNA markers, Dr. Erlich could not only identify the donors of the DNA but also could identify their family members as far as second cousins once removed.

Although such data can be encrypted, reported Ms. Couzin-Frankel, Dr. Erlich pointed out that this can render the information largely useless for research and doesn’t even always protect the donor.

In contrast, however, many participants in trials and databases, such as the database/Web group PatientsLikeMe, see patient altruism as key. PatientsLikeMe has recruited more 300,000 people with more than 2,300 different diseases, who are sharing their health data, how they’re faring in clinical trials, and acting as a support group to one another in order to help medical scientists and drug companies further research their conditions. Patients voluntarily agree to this free flow of information, even though it decreases their privacy.

In another example in which patients cite altruistic reasons for giving up their privacy, the Personal Genome Project at Harvard Medical School in Boston, founded by geneticist George M. Church, Ph.D., has nearly 4,000 participants sharing their DNA sequences and health histories online for anyone to view. The Personal Genome Project even has a “real name” option, which allows participants to post their identity, Ms. Couzin-Frankel reports.

The Science article author, Ms. Couzin-Frankel, is a science journalist with no relevant financial conflicts. The RUDY study is funded by the University of Oxford and the U.K. National Institute for Health Research.

[email protected]

Researchers are attempting to develop new models to deal with patient privacy issues, including profound levels of patient participation in the dissemination of personal data, in the new era of genomic medicine, according to an article in the January issue of Science written by Jennifer Couzin-Frankel, based on interviews with participants and investigators in the RUDY trial and other projects.

The RUDY rheumatology registry in London is an example of such a new approach. RUDY, a registry used for research into rare bone diseases and vasculitis, has an emphasis on patients’ self-reported outcomes. In order to alleviate patients’ fears of loss of privacy because of data sharing, the study offers patients various controls over dissemination, according to one of the study’s principal investigators, Dr. Kassim Javaid, a University of Oxford (England) rheumatologist, wrote Ms. Couzin-Frankel (Science 2015;347:501-3).

©Thinkstock.com

Patients in the study can determine whether their blood, scans, and medical histories can be shared with other researchers. In addition, they will have access to a clinical trial Web page where they can find out whether their tissues samples are being used by other research groups.

This model is thought to not only increase the sense of patient participation and authority in the study, but also to provide transparency and accountability as to how their information is being used. Dr. Javaid refers to this strategy as “dynamic consent,” because patients can choose which portions of the study to participate in and whether to restrict their data and samples to RUDY investigators or to allow others to study them.

The problem of maintaining privacy is profound, because DNA sequencing provides such a potent means of individual identification. Ms. Couzin-Frankel cites in particular a case published in Science (2013;339:321-4), in which a group working with Dr. Yaniv Erlich showed that a man could be uniquely identified based on a partial DNA sequence of his Y chromosome, age, and U.S. state of residence, which is the type of information commonly posted in DNA databases widely accessible to the research community. By combining this information with data he found for others in the same family on popular genealogy databases, where more than 100,000 people already have posted DNA markers, Dr. Erlich could not only identify the donors of the DNA but also could identify their family members as far as second cousins once removed.

Although such data can be encrypted, reported Ms. Couzin-Frankel, Dr. Erlich pointed out that this can render the information largely useless for research and doesn’t even always protect the donor.

In contrast, however, many participants in trials and databases, such as the database/Web group PatientsLikeMe, see patient altruism as key. PatientsLikeMe has recruited more 300,000 people with more than 2,300 different diseases, who are sharing their health data, how they’re faring in clinical trials, and acting as a support group to one another in order to help medical scientists and drug companies further research their conditions. Patients voluntarily agree to this free flow of information, even though it decreases their privacy.

In another example in which patients cite altruistic reasons for giving up their privacy, the Personal Genome Project at Harvard Medical School in Boston, founded by geneticist George M. Church, Ph.D., has nearly 4,000 participants sharing their DNA sequences and health histories online for anyone to view. The Personal Genome Project even has a “real name” option, which allows participants to post their identity, Ms. Couzin-Frankel reports.

The Science article author, Ms. Couzin-Frankel, is a science journalist with no relevant financial conflicts. The RUDY study is funded by the University of Oxford and the U.K. National Institute for Health Research.

[email protected]